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Priorities for Patient-Centered Outcomes Research: The Views of Minority and Underserved Communities
Susan Dorr Goold1, C Daniel Myers2, Lisa Szymecko1
1Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI.
Objective:
To learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).
Data Sources:
Sixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.
Design:
Academic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants.
Data Collection:
Tablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities.
Principal Findings:
Individuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.
Conclusions:
Members of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.
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